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Stories 'normalize' situation for patients making medical decisions in South LA

José Martinez

Hamdi Badar, a patient at UMMA Community Clinic in South Los Angeles, reviews his medical history with a nurse practitioner during a check-up. A pediatrician at another area clinic, St. John's Well Child and Family Center, says telling patients stories about people who have been in similar medical situations can help facilitate acceptance and make them understand that they aren't a special case. Christopher Okula/KPCC

"I've come to find that it's a really good tool for normalizing situations," Choi said. "Just saying that other people have had this experience before … is enough for them to feel like it's more OK for them to acknowledge and recognize that there is an issue."

A new study from the University of Missouri examined how medical decisions are affected when stories about other patients who have made similar decisions are included in decision aids. Rather than playing a persuasive role, decision aids are videos or literature designed to equip patients so they can make an informed medical decision.

In the study, researchers looked at two treatment options for early-stage breast cancer: a lumpectomy and radiation therapy. Both have similar survival rates, which makes it difficult for patients to decide between the two.

Researchers found that including patient stories in a decision aid didn't seem to make the study participants more likely to choose one treatment over another. They did find, however, that decision aids with patient stories were found to be "more trustworthy and more emotional."

That makes sense to Choi. While she "definitely" tries to persuade her patients to adopt healthier lifestyles, she also believes that for patients, knowledge is empowerment. Stories about other patients often help them realize they're not an isolated case.

For example, she's had teenage patients who are "devastated" upon being diagnosed with lupus, an autoimmune disease.

"It's a huge life change for them," said Choi. "So I've started telling them about how I have two really good friends, one from college and one from medical school, who have lupus also. One's a lawyer and one's a doctor."

She said those two friends serve to illustrate a powerful point to her patients: The disease won't define them if they don't let it.

"The first stage is just acceptance," said Choi. "And that is a really important part because they need to start taking their medicines and being compliant."

There's another example in asthma. Medication for the respiratory condition is confusing, said Choi. When patients come in and have been using the medication incorrectly, it's important that she corrects them without "making them feel bad."

"[I tell them that] it's very common for people to be confused, but once we figure this out then your kid's asthma will be controlled," she said. "It takes some of the blame away from the patient and normalizes it."

Stories can facilitate a more personal, direct connection with a patient, added Choi – which is why it's important that they aren't misused in a medical setting.

"I think as clinicians and health care providers, we just have to try to be careful and cognitive of the fact that we don't want to abuse the ability of patient stories to help people feel more comfortable," she said. "And to not use that to bias them in a particular way that might not be in their best interest."

By that, for example, she means using stories to prod patients toward electing to undergo an expensive procedure they don't really need.

In a statement, researcher Victoria Shaffer said doctors "used to be more paternalistic and would tell patients exactly what they should do."

"Now, health decisions more often are shared by medical providers and patients, and patients must digest a lot of complicated information in order to make the best decisions for their health," she said.